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Friday, May 14, 2010

I thought Fridays were Happy Days

So...I didn't get to bed til 5 am...woke up at 9 am...only 4 hours of sleep. I finally just left a message of one of my primary care doctors to try to get something. Dr. Rider had given me ambien but it isn't doing to well and he said he really didn't know many more, because he doesn't deal with a lot of that. He had told me to contact my primary, but it has just been so crazy.

Very moment right now my head feels like someone smashed it against a brick wall. My stomach is just rumbling and I'm getting aggravated. My eyes are still really black...that will go away with time. Oh yes...disappointment this morning. I use to be the President of our Student Campus Ministries in College. Well our teacher that was our representative's daughter has come down with leukemia and it is to the point of no return almost. They had a bone marrow drive today to check for matches...my dad and mom were going and I was like I bet I can't...then I started thinking about it and I was like dang...who wouldn't want my immune system...leukemia is dealing with the white blood cells...and mine work amazing so maybe I should go and try. You already know my disease is autoimmune so my immune system is superman and is what is killing my body...ok...so I get excited and we go up there...I see Mr. and Mrs. Gaillard...then I read the sign...if you have an autoimmune disease you cannot participate. I got tears in my eyes. I wanted to actually feel like I could help someone and bam...couldn't...so everyone the most I can do for Jamie (their daughter) is ask you all to pray! and pray that someone that went today will be a perfect match!

Also...I have met a friend through blogging and her name is Kelly. I truly believe God brought us together because she too suffers with a chronic/severe diagnosed Crohn's Disease. She is in the hospital right now with an attack and I ask that you all lift her up in prayer...it is so nice to have someone who understands EXACTLY what you are going through. So in your spare time just lift her name up!!

So as of now this is my Friday...I am plopped on the couch with mr. miyagi waiting for the headache to subside. I had to run to the bathroom a second ago becuase I just got sick and started gagging again...didn't throw up but sure almost did...I have no clue what is going on...

I am going to see BOTH Dr. Rodriguez an Dr. Rider the 24th of this month. With Dr. Rodriguez we will discuss the Remicade and figure out what my routine needs to be and if the dosage needs to be raise...we have pretty much already figured out that I will need it sooner than most people...Dr. Rider was saying about every 6 weeks when most get it every 8...I'm thinking every 4...because that is when my body starts doing its crazies...so...that will be with Dr. Rodriguez. With Dr. Rider we will reassess my internal fissure and check it..make sure its not a fistula...see its size again...see if its healed no healed...all of that...if it is still there this time I'm pretty sure we are going to do the surgery so it doesn't matter to me really...whatever I have to do to get better I'm all for it!

Ok my sweet blogging friends...be blessed :) I love you all and thank you all!!!!

4 comments:

Aww...So this post AND the comment you left on my page, have me in tears right about now! You are so sweet of a girl, I can NOT tell you how much your words are meaning to me right now. Finding you and getting the amazing opportunity to actually hear your story about your battle with Crohn's has been nothing BUT inspiring to me! I can not tell you enough about how sorry I am that you have to live with nasty disease called, "Crohn's" BUT KNOW that you are not alone, either! My heart feels every pain that you are going through, inside and out! I can't wait for the day when we may actually get to meet in person, that would be too awesome! If we could ever get my butt out of the hospital long enough, I would LOVE to come to Birmingham to see ya! It's not too far from where I live. (Macon, Ga)

It is 5:30 p.m. (my time) right now and I am going to be receiving my Remicade at 6:00. My nurse actually is walking in my room to give me my Benadryl and Tylenol now. I was able to see some of your video last night. I know those feelings all too well, myself. I will let you know how my treatment goes tonight. Wish me luck with everything, please!

& p.s. I have to tell you thanks again for your sweet-sweet words! They could NOT have come at a more perfect time! <3

Well it is about 10...so if this is your first treatment you should just about be finishing up! I am wishing you luck! Be ready for the throat swelling and the swelling everywhere else and hit that call light to get some more benadryl! I just chug mine the entire time! As for meeting it is a must now! :) You already mean so much to me just with the connection God allowed us to make! So one you have to get better to the point of traveling and two I have to get better to the point of traveling!

Still in my thoughts and prayers! Like I said...you fight I fight :)! Let me know if you need anythign (over the web lol) as in talking and visiting online and support wise. I cannot stand support groups...they are no no good most of them can take a pill and they are better so they have no understanding of what you and I go through. Not being mean...its just they don't understand and that makes it harder on the ones like you and I! So message me anytime :)!

Hey Allison. I finished my treatment last Friday night and I am doing much, much better. As you certainly know, Remicade has some nasty side effects and I certainly felt the weight of those for several days post treatment. BUT I think we both agree that the benefits outweigh the bad. You are SO brave to have posted your videos...I can't tell you how much they meant to me at the time, even though I had received Remicade before. I know the way your body hurts after the treatment and how emotional they make you feel. Knowing that I am not alone is so comforting! I can't quit telling you how happy I am to have found you on here. Your kind words have definately brightened some of my sad-hopeless days. Your faith is unreal and has certainly encouraged me to deepen my faith in HIM even when flare ups are the ugliest! Thanks again for your testimony and your friendship! :)

"He's Still Working On Me" A Little Bit About Little Me

I created this blog to tell MY story to anyone and everyone that God desires.

Age 6: I accepted Jesus Christ as my Lord and Savior. I was introduced to my first love, my strength, and my best friend. My life changed!

Age 18: I met the one my heart desires. Andrew James Hope. I was introduced to my companion, my confidant, and my soul mate. My life changed!

Age 21: I was diagnosed with an incurable disease. Crohns disease. I was introduced to pain, decisions I never thought I would have to make,
and something I would never be able to rid of. My life changed!

These are three key points in my life that have added to the foundation of who I am today. Briefly I will tell you that my Crohns is very specific in the sense that it is not like all the other Crohns cases. My case is almost to the point of being termed untreatable; therefore, physically I am in pain and mentally/emotionally I am exhausted. So to say things are hard right now is an understatement.

However! I AM receiving blessings daily! God is seeing me through this as well as Andrew, my family and my friends!

*If you are a follower of my blog and you are suffering with a disease that needs more awareness, leave me a comment and let me know! We will place your ribbon, disease, and name on the wall! God gives each of us a journey! Everyone's journey in life is different! Let's bring awareness to these terrible diseases, disorders, syndromes, etc. and ultimately together FIND THE CURES! God Bless!